Hard Work

Completely unplanned and fully unforeseen, more than a month has now passed since I've posted something here and even now I'm not sure whether I'll complete this piece. So what happened?

Put simply, something occurred which I wouldn't have believed possible; I was ambushed by my job. I've written a couple of posts here already where I've described the circumstances – that since the middle of June I've been trying to build up a team to care for a very sick ten-year-old boy who has been in a persistent vegetative state (PVS) for the past seven years, eighteen hours daily in his own home. This has involved a lot of overtime (which, incidentally, I don't get paid for, instead this is “time off” which theoretically I can take at some as yet undefined time in the future when things aren't as hectic), working nights, weekends, etc. It has frequently meant subordinating my free time to a very fluid work situation, with sudden changes in rosters, constantly changing plans and the ordinary chaos which life brings. And certainly this wasn't conducive to the retention of a basic personal balance. But, as anyone familiar with the nursing profession knows, such circumstances are not unusual in our job and they're something you get used to. No, there was more to it than that and to explain it I'll have to be a bit more specific – although I'll immediately add the disclaimer that I am changing many of the incidental details here to protect the anonymity of my patient and his family.

Luis is the son of parents who immigrated to Germany from Southern Europe twenty years ago. Following a viral meningitis at the age of three, he suffered extensive generalised brain damage which left him dependent on a respirator, completely paralysed, subject to epileptic fits and in a state of consciousness which is … indefinable. The advances in medicine in the past decades has made it increasingly possible for doctors to save many people who would have formerly died, but have also meant that ever more people have been brought back from the brink of death – however, not all the way back. They remain in a condition which is not coma and not brain-death, conventionally known as PVS, also sometimes called apallic syndrome. In German it's referred to as Wachkoma, waking coma. Karin Quinlan and Terry Schiavo had PVS, the former Israeli president, Ariel Sharon, has been in a PVS since January 2006.

PVS raises huge ethical questions which are very difficult to answer, hinging as they do on very basic questions regarding the relationship between cognition and the nature of human life, the right to life, the right to death, the right to basic human dignity, etc. I don't want to go into these here, will just comment in passing that the extent to which people in a PVS perceive their surroundings and experience themselves is an issue about which there are very different views … and very little certainty.

Luis' parents have lots of certainty. As far as they are concerned, their son is in contact with his environment; they interpret his every movement and facial gesture, every reaction to touch and stimulus and find meaning in all of them. They may be right. Or partly right. Or it may just be wishful thinking. Their viewpoint is shared by the majority of the relatives of those in PSV that I have encountered – and I have worked in this area, with occasional interruptions, for nearly a decade.

Luis is the first patient I have cared for at home. It is, in many ways, the ideal nursing situation. You have only one patient to care for, there are none of the usual pressures of the normal everyday hospital or nursing-home routine. It is a marvellous fact that the costs of this intensive care (in cases such as Luis' costing, according to my calculations, more than a quarter of a million Euros annually) are covered by the German public health system – even if this increasingly means - in a world where the number-crunchers are gaining ever more influnce in the health-care area - that relatives, care companies, social workers and others have to fight quite a bit to obtain it.

Luis' room opens directly into the family's living room. The door has been removed so that they have him in sight all the time. This of course also means that they also have the nurses who are caring for their son in sight all the time. Over seven years they have learned the best way to do everything for him, they have learned to interpret the tiny signals which he sends (a small change in the sound of his breathing over the respirator, a rise in his pulse, continually signalled by the monitor). Over seven years they have had six or seven care services, not all of whom were serious and professional. Over seven years they have learned mistrust.

Luis' mother is a full-time housewife. She must be there for her son, as she sees it. When new nurses come, she must be sure that they can care for Luis properly before she is prepared to leave them alone with him. And so, every new colleague has to accept the fact that every move they make will be observed, judged, and any action seen as being less than optimal will be immediately critically commented on and corrections demanded. During the day, from Luis' mother, in the evening and at weekends from his father as well.

If you start to work here, you have to accept this. You have to accept that there is very little scaling of priorities. Everything is important in the eyes of Luis' family, from the way you disinfect your hands, to the way you turn him over, to where you place a towel, to how you use the suction machine to relieve bronchial congestion, to what lights you turn on and off. Sometimes the tone can be pretty tough, although this frequently has to with linguistic inadequacies. And you'd better get used to the fact that every action which doesn't come up to standard is a subject for discussion as well as something which will probably be reported to me (as team coordinator) and subsequently by telephone to our general coordinator at our company's central office.

We are there eighteen hours a day; the day shift from eight in the morning till three in the afternoon, the night shift from nine in the evening until eight in the morning. The family stays up late, generally till after midnight and the door of the parents' room is left slightly ajar after that. Should an alarm sound for too long in the middle of the night, you have to reckon with the possibility that one of the parents will come to see what's wrong.

Of course, this is all only one side of the story. Since Luis' illness began seven years ago, the family has been living in a state of more or less constant stress. That the marriage of his parents has survived and that their relationship is still strong, that the father has kept his job and that neither of them has become an alcoholic distinguishes them from many other families faced with a similar situation. This family is living with a continuous open wound and we nurses are strangers, continuous intruders present in their private family life for eighteen hours every day, helping to keep that wound open. Because that is what they want. Because other alternatives, like, for example, institutional care, are not acceptable to them.

I knew this assignment would be difficult before I took it on. What I had, in retrospect, underestimated was the strain it would put on my own psyche. It came to a head for me on Saturday, three weeks ago, when I had worked ten nights out of the previous fourteen and finally had two days free before switching to day duty. I had slept for only two hours that day, attempting to force my body back to a normal night/day rhythm. My phone rang late in the afternoon. It was our chief coordinator, telling me that the colleague who was supposed to work that night had suddenly called in sick. Could I take over the shift?

For the first time in my professional life, I simply refused. I realised that I just was not capable of going there that night, even if it meant being fired. Luckily, after a brief discussion, she realised the situation I was in and together we found another solution for the problem.

But at that stage, change was in the air anyway. A new colleague had joined the team at the beginning of August, a middle-aged nurse with twenty-five years professional experience. After two days, she'd requested a different assignment. There was a meeting at head office on the Monday and an appointment was made with Luis' family for the following day. We informed them that we would be terminating our contract on September 10.

It wasn't an easy meeting.

Personally, I was prepared to continue the assignment, but it was also clear to me that I couldn't do it on my own. From the point of view of the company in general, the risk was too great that continuing the job could result in experienced, qualified nurses quitting their employment completely - and it is already difficult finding enough suitable people to cover the fifteen individual patients our intensive home-care nursing department looks after in the whole Rhine-Ruhr area.

Ironically perhaps, the work has been somewhat easier since. Luis' parents had already begun to trust me and, after they had forgiven me personally for our firm's betrayal of them, that growth in trust has continued. They'll even leave me alone with their son now. And I have also shared some wonderful moments with them. The family has a small allotment garden where they spend a lot of time at the weekend and I've spent some great Saturday evenings there with them and their friends. They are more relaxed there, there's a lot of laughter and singing and joking, and even packing Luis into his wheelchair, loading it into the family van and driving home at one thirty in the morning is more of an adventure than a chore.

I find myself frequently feeling very sorry for them ... and often feel like a complete bastard as a result. But that doesn't change anything. For various reasons, many completely understandable, they lack the flexibility and capacity for compromise which would have made our continuation of the assignment possible.

* * * * * * * * * * * * * * *

So that's why I haven't been posting for the past month or so. The fact that I've finished this is a sign for me that I've managed to free my head again ... at least partly. Luis' mother told me today that she has found another nursing company to take over from us. I wish them all the luck in the world. They'll need it.

As for me, after I finish our last shift with Luis at eight in the morning on September 11, I have a few days off and then ... well, the next assignment is already lined up; a four-year-old in another neighbouring town. Colleagues who have worked there say that it's a bit easier ...